Questions & Challenges for “Remember Remember”

Literary questions for reading groups

For discussion

Q. If you only heard Jessica’s side of the story what misconceptions would you retain?

Q. Doris’ story unravels backwards in time. Why do you think the author chose this technique? How effective is it?

Q. Doris used to be first on Pandora’s ‘prayer list’. She has now ‘consigned her grandmother to the past tense’. Why? What are the implications of this?

Q. Jessica is more disturbed by her father’s part in the big deception than her mother’s. Why is this? What do you think of his response to the question she asked as a child in the garden?

Q. Recalling her mother’s suppressed grief, Jessica asks: ‘All the anger I see in her now, all the fear, is it the emotion finding expression at last?’ What do you think?

Q. In the second half of the book we get an explanation for many of Doris’ behaviours. Does this change your feelings about her? Would knowing change the attitude of her carers?

Q. ‘Step by step she has sunk down to the basement of her being,’ Jessica says of her mother. Why do you think the author chose this analogy?

Q. Doris uses her own names for the carers. What other devices are employed to give the reader insight into Doris’ perceptions when she is unable to communicate effectively? Which is the most effective for you?

Q. Family sagas that span generations can be challenging for the reader. Doris and Jessica share certain experiences: losing a brother at a young age, having a selfish sister, being a driven person. Why do you feel the author added this extra potential for confusion?

Q. What new insights into dementia did you gain from this book?

Moral and ethical questions

Remember, Remember revolves around the central theme of autonomy, respect and justice in relation to someone who has lost the capacity to defend her own rights and interests.

Rights and interests

Q. Putting Doris into a home is a difficult decision for Jessica. Choosing an expensive home, visiting her frequently, could be seen as more about her own interests than Doris’. To what extent would you say this applies?

Q. Doris is no longer aware of what is being done with her property or money. Beatrice and Adeline believe that this means the family’s needs and wishes trump hers. Do you agree?

Q. Pandora feels she is neglected because her mother is preoccupied with Doris. Who do you think has the prior claim?

Q. Jessica says that dementia itself is ‘an abuse of human rights.’ Do you agree with her?

Q. Jessica is unwilling to marry Aaron if she has a strong likelihood of developing Alzheimer’s. What do you think of both his and her reactions to this concern?

Q. The Morningside staff and the family criticise Jessica for taking too little care of her own interests. Is this justified?

Q. As Doris deteriorates Jessica gives up her career, her freedom, her relationship with Aaron. Was she right to do so? Would you have done the same? Beatrice, Adeline, Pandora and Aaron all have a different take on her motives and actions. With whom do you most identify?

Autonomy and paternalism

Q. When she was mentally competent Doris said that

she wanted to stay in her own home and

she did not want her life to be prolonged if she developed a condition such a dementia.

To what extent should her wishes have been respected/over-ruled at the different stages of the illness?

Q.The staff in the home discuss the issue of

involving Doris in research

giving her medication disguised in food, and

resuscitating her.

To what extent do you agree or disagree with Jessica’s and Aaron’s views on these practices? (Chapter 8) Who should decide?

Q. When Doris first started showing signs of dementia, both she and Jessica explained them away. Did their arguments ring true? Subsequently Jessica felt she had done her mother a disservice not acknowledging her problems earlier on. Had she?

Confidentiality and the right to know

Q. The lawyer, Simon Montgomery-Bates; the GP, Dr Robartz; Doris’ solicitor; and Aaron Wiseman, all have to consider the conflict of telling versus concealing information. To what extent do you agree with their choices?

Q. Aaron changes his mind about telling Jessica what he knows (Chapter 8). Do you agree with his rationale?

Proxy decision making

Q. Jessica’s sister and aunt repeatedly challenge her decisions on behalf of Doris. How would you suggest family tensions like this should be handled?

Q. Given the information that eventually came to light, how morally acceptable was it for Jessica to take the responsibilities for Doris which she did – both practical and ethical?

Balance of burdens and benefits

Q. The ‘ten commandments’ of care are designed in the interests of people with dementia. But Jessica feels they have added to her burden of guilt because she can’t live up to them. Discuss the practical and moral implications of this tension.

Ethical issues relating to end of life

Q. Jessica tells James that she plans to opt out of life if she shows signs of developing dementia. Do you think she would in fact do so? And if so, what route might she take and what might prevent her being successful? Do you agree with her decision?

Q. Medication or poison can be the same thing, just given in different quantities, Jessica says. When does a merciful act become murder?

Q. When Doris becomes aggressive and difficult to handle in the home Jessica wonders, ‘…wouldn’t she be better off… dead?’ What do you think?

Q. Pandora, Doris and Jessica discuss the idea that elderly people should be allowed to die if they feel they’re a burden on their families (Chapter 18). Whose view do you support?

Ethical issues related to the management of people with dementia

Q. James, Pandora and Jessica all have different reactions to the use of sedatives for people with dementia. What is your view?

Q. At various points Jessica uses restraint and verbal assault. What do you think of her actions?

Q. Beatrice suggests electronic tagging as a way of keeping track of Doris’ movements. What is your reaction to such a tactic?

Q. Jessica asks, ‘But is this shell really still my mum?’ How would you answer her?

Q.How acceptable do you think it is for the staff in the home to

dress Doris in clothes she would never have worn in the past

give her food and drink she used to dislike

use childish expressions and endearments when speaking to her?

Aaron and Jessica use the same terms for those they love. Does this change your assessment?

Q. When Jessica finds the photograph of the Fenton family with Doris’ face scratched out she takes this as evidence that Doris was aware of losing her grip on reality? Do you agree with her analysis? She asks: ‘What must it do to a person to contemplate their living extinction?’ What are the implications of such an awareness?

Q. Beatrice says that luxury and sacrifice are wasted on Doris. Is this a fair statement? Would it be true of anyone who is at an advanced stage of Alzheimer’s?

Q. Sometimes Jessica resorts to streams of words which could be construed as mocking and disrespectful. She defends them as a release for her frustration. How morally acceptable is this? Would it be defensible if staff in the home did the same thing?

Q. The Morningside was the chosen place for Doris on the basis that: ‘Person-centred care was their watchword. Space, flexibility, privacy, respect, realising full potential.’ How would you rate each of these elements in assessing the excellence of care for people with dementia?

Q.The doctors are reluctant to give Doris a label. What are the consequences of this

for Doris herself and

for Jessica?

Justice

Q. Jessica came close to killing her mother. Given the situation and provocation, how compassionate do you think society and the courts should be in dealing with such cases?

Q. Jessica hides her mother’s stealing by disposing of the articles in ways that salve her own conscience. Do you approve or disapprove?

Resource allocation

Q. Care in The Morningside costs £968.80 a week, £50,000 a year. What do you think about that? Should families be forced to sell houses to fund care of this sort?

Q. Jessica appeals against the decision not to fund medication for Doris to slow the progression of her illness. Discuss the issues of

postcode lotteries,

official guidelines on what may be funded

prolonging different phases of dementia.

Q. NICE decides which drugs may be funded by the NHS in England and Wales but not in Scotland. The GP says they are ‘trying to juggle fairness with sound economics’. The Patients Association complains that they are ‘bureaucratic, unaccountable and run by economists not doctors’. Dr Thain of Tavistock says their decisions smack of ‘a principle of equal unfairness: don’t do a good turn for anyone in case you have to do it for everyone.’ What do you think of their role, their sphere of influence, their decisions, as outlined in this book?

Q. It is predicted that as the population ages there will be a steep rise in the number of people with dementia. Which of the issues raised in this book do you think should inform decision-making in respect of